Hi again Rachel.
First let me address the ketamine question. I've done the ketamine admission twice now--the first time I was the second patient that they used the protocol on and the second time I went in was their eighth run. I mention this because the dosing was essentially the same despite the year in between. They follow the example of Dr. Schwartzman, a Drexel physician who has been using ketamine for pain disorders for a long time. Anyway, that's somewhat needless background but my point is that the dosing information that I give you will probably be accurate but, due to the experimental nature of the treatment, may have changed somewhat.
The essential number in their protocol is 1 mg/kg/hr--their dose ceiling. In theory this is the highest they will go with the ketamine over the 5 days of treatment. I've discussed exceptions and they were
open to the possibility of going higher if we needed to (however, I've been with my neurologist for almost 4 years so I often be accorded some flexibility and input that some patients might not get). But we didn't go over, or even come that close to, the ceiling either time.
If I remember correctly they'll start at 0.1 mg/kg/hr. For me that was about
128 mg/hr (I weighed around 280 lbs then--in round one I was probably closer to 250 but that's another story). That translates easily over to 12.8 ml/hr pump rate of the IV (this is what you'll be seeing, so just remember that the actual amount of ketamine is 10x what you'll see on the IV pump). In the beginning they push the dose up fairly rapidly, increasing 0.1 mg/kg/hr each hour (my memory is a little foggy--it's possible that they step up in increments of 0.05 mg/kg/hr but I think I'm right). The dose increase is conditional however. If you are feeling mildly inebriated or exhibit nystagnus (which is essentially a "fluttering" of the eye when you're looking in your periphery), they'll stop at the dose that you're at and revisit increasing the dose again either every 4 or every 6 hours, again dependant on the same conditions (inebriation/nystagmus). The goal is for you to be in a state of mild inebriation. After some time your body builds tolerance and you'll eventually increase the dose again. So your dosing depends on your response to the drug and your body mass.
Regarding medications that you've already tried: That's somewhat of a tough question to give a direct answer to. Of course it will depend on your particular neurologist and, more so, your actual treatment history. Having reached the point some years ago of being told that I had exhausted all of their treatments, I can say that I did revisit some medications that I had already tried. But, at least while they have new options, you can probably expect that they'll want to try a new treatment. This doesn't necessarily mean that you may not be asked to go back on some of the medications you've listed. They like trying different combinations. Frequently this is a coupling of an antiseizure medication (topamax, zonegran, depakote, etc.) and an antidepressant. You'll be trying to find out both how well each medication works and how well they work together. You may see anti-inflammatory, blood pressure, antipsychotic, antidepressant and other neurologically active drugs in different combinations. For example an antipsychotic called Abilify might be used to potentiate the effects of your main prophylactic medication (I believe it's usually coupled with Depakote, though it may be Lamictal).
I very much empathize with you about
wasting time out of your life to deal with the migraines. It's horribly frustrating. I know that I don't need to tell you that patience is required but it is very important to keep in mind. Many medications take a month or two or more to reach their full effect and some others that may not seem to be doing a good enough job might actually over time have a cumulative "healing" effect on your brain. The temptation to jump ship after a month or two of a drug treatment that isn't helping is overwhelming. Again I do want to point out that patience can pay off but I also have to admit that I bailed on medications fairly early on a good many times. Unfortunately later on that can lead to wondering whether a particular drug might have worked if you'd only given it more time or even having to actually go back on the drug again to find out. And that wastes more time. We all want to think of ourselves as people who are experiencing headaches rather than people with
headaches. Admitting that the headaches are a part of you feels like giving up or giving in and, for a while at least, it might actually be healthier to view the headaches as being in transit--a temporary distraction from your "real" life. After a while, though, trying to keep living your pre-headache life while you're continuing to have headaches can leave you with not much of a life of either type. It's not a happy thought, and I do very much hope that your headaches get under control soon. But when or if you start seeing your life as that of a headache sufferer, you've then made the first step toward making that life better.
P.S. I'll try to be available tonight if you have any further questions or things that you want to discuss. And check your email.
DX: NDPH, Recovered(?) CRPS
RX: Lamictal, Namenda, Wellbutrin XL, Oxycodone, Oxycontin, Concerta (Methylphenidate), Clonazepam, Rozerem, Magnesium (1200 mg/d), Riboflavin (400 mg/d).
PRN: Ketamine nasal spray
, Toradol IM, Celebrex, Haloperidol, Lodine, Zofran, Phenergan, Ambien CR
rarely: Migranal, Thorazine, DHE IM, Droperidol IM, Reglan, Provigil, triptans (Imitrex, Maxalt, Relpax, Zomig, Axert, Amerge)I can be contacted personally via email at firstname.lastname@example.org.